glutening Celiac and Mental Illness

[Squiishtopher]

  This is my first post here. I’ve looked at the website on and off for years, but could never get myself to join. I was diagnosed with Celiac disease when I was 6 years old. They noticed I was extremely malnourished and super thin, so they did some tests. Following that, they did a biopsy which confirmed what they suspected. My mother took to it right away. She was very strict about it. Same with my maternal grandparents, as they had my Grandmama (great grandma), who was diagnosed with celiac later on in her life. My paternal side, not so much. From my diagnosis to around 11 years old, they didn’t believe my diagnosis and therefore, did not follow my diet. I was sick constantly as a kid.

  Going further, it was hard to maintain the diet and the urges. The longest I’ve ever made it with no gluten was just over a year. It’s hard not to notice the connection between my binges and my depressive episodes. I’m now 18 and still struggle immensely with my relationship with food. I feel the symptoms and they get worse with every binge but I can’t seem to stop myself.
 

I have been well aware of all the medical issues both life threatening and chronic, but it seemed to fuel my guilt and harmful thoughts. I am terrified now that all the issues I have currently were caused by my lack of self preservation. After years of balancing medications and going to therapy, I’m finally able to acknowledge the pain I’ve caused myself. I wish to speak to my family doctor about this but I’m also afraid of the judgement. Even worse than that, I am terrified she won’t believe me.

So, how do I strictly follow my diet when the urge is stronger than protecting myself? How do I bring this up to my doctor?
   
 

Christopher

[trents]

Sqiishtophe, welcome to the forum!

What is it that you are afraid your family doctor won't believe you about? Having celiac disease? Being sincere about regretting your health negligence?

And you may know this, but some mental health issues typically manifest themselves in young adulthood.

[Squiishtopher]

13 minutes ago, trents said:

Sqiishtophe, welcome to the forum!

What is it that you are afraid your family doctor won't believe you about? Having celiac disease? Being sincere about regretting your health negligence?

And you may know this, but some mental health issues typically manifest themselves in young adulthood.

I began struggling with mental illness at a very young age. I left it untreated and same with my celiac I neglected it. My doctor is aware I have celiac, she was the one who got me all the tests. What I’m afraid of is whether or not my concerns will go unheard. Or that they’ll be chalked up to anxious rambles.

It’s shameful to admit the negligence and logically I know, it’ll most likely be fine. Just knowing the repercussions of it is terrifying. Especially the guilt from my parents. 

[Wheatwacked]

Wheat is an opiate   Read this article it may help you understand.            https://drdavisinfinitehealth.com/2012/04/wheat-is-an-opiate/ 

Don't feel guilty about anything. It is sad you are even in the position but remember they are addicted too, just don't know it. That's why they get angry at the suggestion of not eating wheat. It's unamerican. And people joke about gastric distress as though it is a rite of passage. Look how much is spent on advertising to fix what gluten breaks. Definitely talk to your doctors and family about your concerns whatever their response at least it is not rattling in your head. 

Vitamin D is usually low in Celiac Disease.  I found that at 10,000 IU a day it really helped my attitude, and of course the gluten free diet cleared the fog. Apparently, I've had Seasonal Affective Disorder for most of my life. Ask for a vitamin D blood test.  My son who works every day on the beach in S Florida so plenty of sun exposure year-round just was tested and was low in vitamin D; I think your plasma vitamin D it is an important thing to know.

2 hours ago, Squiishtopher said:

From my diagnosis to around 11 years old, they didn’t believe my diagnosis and therefore, did not follow my diet. I was sick constantly as a kid.

This series is good to read to see how others deal with it.

 

 

[Squiishtopher]

7 minutes ago, Wheatwacked said:

Wheat is an opiate   Read this article it may help you understand.            https://drdavisinfinitehealth.com/2012/04/wheat-is-an-opiate/ 

Don't feel guilty about anything. It is sad you are even in the position but remember they are addicted too, just don't know it. That's why they get angry at the suggestion of not eating wheat. It's unamerican. And people joke about gastric distress as though it is a rite of passage. Look how much is spent on advertising to fix what gluten breaks. Definitely talk to your doctors and family about your concerns whatever their response at least it is not rattling in your head. 

Vitamin D is usually low in Celiac Disease.  I found that at 10,000 IU a day it really helped my attitude, and of course the gluten free diet cleared the fog. Apparently, I've had Seasonal Affective Disorder for most of my life. Ask for a vitamin D blood test.  My son who works every day on the beach in S Florida so plenty of sun exposure year-round just was tested and was low in vitamin D; I think your plasma vitamin D it is an important thing to know.

This series is good to read to see how others deal with it.

 

 

Your reply really has made me feel heard. Not going to lie, I teared up a bit. Knowing that there is support and articles that explain what I’m feeling is not in my head makes me feel less like I’m fighting this alone. Thank you for these articles. 

[Scott Adams]

Welcome, and I don't think anyone here would recommend that you cheat on your diet, however, if you do consider an AN-PEP enzyme like GliadinX (they are an advertiser here, but I'm not paid to push their products), which may at least help to some degree. I think you know already that the best path to both physical and mental health for you is going to be a strict gluten-free diet, so hopefully we can help you accomplish this!

 

[trents]

In addition to beginning a D3 regimen of at least 5000IU Daily I would recommend a gluten free high potency B-complex daily. Costco's Nature Made is a good choice. Wheatwacked is right about celiac disease typically generation vitamin and mineral deficiencies due to the damage done to the small bowel villi. Vitamin and mineral deficiencies can play havoc with our mental health.

[heidirae]

Hey there, I actually came to this site looking for help and thoughts for the same struggle. I've been diagnosed with Celiac Disease for 5 years now and have gone through periods of time where I was able to be gluten-free no problem, but often find myself in binge cycles where I eat tons of gluten. I'm a silent celiac so it doesn't "hurt" me when I do this in the moment...I kind of compare myself to a smoker! I know it'll hurt me someday, but not today essentially. I struggle with a lot of shame as well and it was a really hard, tearful discussion with my provider to open up about it. One thing that helped me with my doctor was a) having a great provider who I trust and b) remembering they see tons of stuff they don't agree with or approve of, but it always goes a long way when they see people who just want to do better...who are willing to open up and try. Plus, quite frankly, I'm paying them to help me and my end result has to be more important than any *potential judgment. That was a real pep talk I had with myself 😅 I see a lot of comments on other threads where people are just kind of like, well it's poison for you so don't eat it! That's like telling a stressed person not to stress, ya know? If it was that easy, I'd stop doing it! 🙃 I'm sorry the shame of it is even remotely something you're having to struggle with. I'm a mental health counselor and was giving myself a really hard time for these behaviors when I "should" know better. It's just not that simple. I do know that shame and repetitive behaviors (dareisay addiction) go hand in hand and really fuels it to continue. That being said, I'm in the process of linking up with an eating disorder clinic that offers virtual groups (I'm 4 hours away from any good ones). This is the direction I'm taking in addition to working with my provider to find a good medication regimen. We're coming at it from an addictive pathway perspective and trying Wellbutrin to try and cover the impulsivity, anxiety, and essentially food addiction. I've also been trying a stimulant they prescribed just to suppress my appetite a bit which helped significantly, but coming off it went right back to old behaviors. Hence the eating disorder clinic. Sorry this got long-winded but I really hope it helps even a little. Just seeing your post helped me so much to feel like I'm not the only one out there struggling not to eat gluten. Other people make it sound so easy sometimes. Best of luck with all of this!!

[Wheatwacked]

Is Lithium Deficiency Real? Health Effects of Low Lithium

With everybody drinking bottled water more people are becoming Lithium deficient. The 5 mg dose of Lithium Orotate is not the 600 to 1500 mg massive dose of Lithium Carbonate used for bipolar disorder.

The proposed RDA is 1 to 40 mg a day. I found that with 5 mg a day I don't need the Buspirone I was prescribed for anxiety. It moderates the need in me to immediately respond to an urge. Subtle but effective, could be defined as patience.

 

Edited March 23, 2022 by Wheatwacked

[Starrmomma]

On 3/22/2022 at 11:28 AM, Squiishtopher said:

  This is my first post here. I’ve looked at the website on and off for years, but could never get myself to join. I was diagnosed with Celiac disease when I was 6 years old. They noticed I was extremely malnourished and super thin, so they did some tests. Following that, they did a biopsy which confirmed what they suspected. My mother took to it right away. She was very strict about it. Same with my maternal grandparents, as they had my Grandmama (great grandma), who was diagnosed with celiac later on in her life. My paternal side, not so much. From my diagnosis to around 11 years old, they didn’t believe my diagnosis and therefore, did not follow my diet. I was sick constantly as a kid.

  Going further, it was hard to maintain the diet and the urges. The longest I’ve ever made it with no gluten was just over a year. It’s hard not to notice the connection between my binges and my depressive episodes. I’m now 18 and still struggle immensely with my relationship with food. I feel the symptoms and they get worse with every binge but I can’t seem to stop myself.
 

I have been well aware of all the medical issues both life threatening and chronic, but it seemed to fuel my guilt and harmful thoughts. I am terrified now that all the issues I have currently were caused by my lack of self preservation. After years of balancing medications and going to therapy, I’m finally able to acknowledge the pain I’ve caused myself. I wish to speak to my family doctor about this but I’m also afraid of the judgement. Even worse than that, I am terrified she won’t believe me.

So, how do I strictly follow my diet when the urge is stronger than protecting myself? How do I bring this up to my doctor?
   
 

Christopher

Hey!! I haven’t read through all the responses so I’m sorry if I’m repeating anything other people have shared…

First, I’ll share some of my experiences that give me some insight: I have a child who was diagnosed at 9 years old (and now a second child was diagnosed at 7). We made our entire house gluten free. The kids father keeps getting them sick, especially my older daughter with celiac (who is now 13) because she’s ultra sensitive. He has them every other weekend and it seemed like we would just get her feeling better in time for her to go to his house again (she is refusing to go to his house anymore after getting extremely sick and hospitalized after Christmas). This is sooooo heartbreaking as a mother, and I’m gonna be honest, what my kids dad is doing is medical neglect. Your father getting you sick over and over again was neglect. I hope that’s ok for me to say. He held a lot of the responsibility to keep you safe as a child, you didn’t have the ability as a child to provide that for yourself. A lot of what you’re dealing with right now is a result of what you went through (which is traumatic in its own way). I’m not saying this to encourage you to blame someone else, because even when we’re hurt by other people it becomes our responsibility to heal from that anyway, but I think you need to be a lot easier on yourself. Any maybe you’ve already talked through that in therapy (therapy is the best!!! When we have the right therapist). I might be reading this wrong, but it sounds like you’re kinda beating yourself up for the pain you’re going through because you keep going back to gluten. It kinda breaks my mom heart. You are only 18. I’m impressed with how much responsibility you’re taking for yourself and how aware you are. I hope you give yourself time (even years) to sort this out. It’s ok to take time. 

Mental illness is definitely tied to celiac. I’m not sure if they know all of why, but part of it is from the malnourishment that comes from our intestines not absorbing the nutrition we need. Again, with having a parent not provide the safe environment you needed, your body may struggle with that. My daughter has extreme anxiety that gets debilitating. It’s heartbreaking to watch and is taking lots of medication and therapy and love to work through. Her doctor said that she will likely never be emotionally the same (she had celiac undiagnosed for years). I still hope it’s possible to get to the point that medication and therapy aren’t needed. Maybe others have thoughts or knowledge on that. 

Another experience I relate to you with is that (although I only have gluten intolerance) I knew gluten made me super sick, but it took me years to get completely off of it, and to be honest I didn’t stop eating it completely until my daughters diagnosis. It was embarrassing to feel so out of control of my diet and then feel so horrible afterwards. I finally learned to stop using shame and fear on myself. I went more towards intuitive eating (which you can google). The thing that made the biggest difference was letting myself eat it (instead of forcing myself to not eat it—because that’s the guaranteed way to make us cave and give in!!) and then really intentionally letting myself feel how physically horrible I felt, instead of trying to stay in denial. I worked on loving myself enough to know that I deserve to take care of myself and feel good, and also loving myself if I ate gluten and felt awful. Eventually it changed from telling myself I can’t have it—which then makes me want it!—to realizing I don’t actually WANT it, even if I want it in a moment. It would give me the strength to get through the cravings. This took years and lots of therapy! And now it’s been ages since I’ve craved it. 

I hope some of this is helpful! 

[knitty kitty]

Here's some helpful reading...

Nutritional therapies for mental disorders

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248201/

And...

Bread and Other Edible Agents of Mental Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809873/#!po=18.0556

And...

The Role of Vitamins and Minerals in Psychiatry

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/#!po=10.0000

 

[Wheatwacked]

13 hours ago, Starrmomma said:

intuitive eating

I have always believed in it. Mankind managed to survive without double blind studies on what to eat for a long time. But that was before advertising, peer pressure and GMO and chromosome manipulation of wheat. For it to work you have to first rebuild your reserves of all the essential vitamins and minerals, so you are responding to needs as opposed to cravings.

[Scott Adams]

I just want to point out that, so far anyway, all commercial wheat is non-gmo…I believe. The research I did was years ago but I am pretty sure this still holds true. They are currently doing research and using genetic techniques to modify wheat so that it might be safe for celiac’s, but this is not commercially available.

[trents]

I've said this before but I'll say it again. There's this philosophy out there that every change humans make to nature is necessarily bad. And granted, there are plenty of examples of that being the case. But IMO, nature doesn't always get it right either. And there are many examples where human engineering has improved upon nature and corrected problems that nature caused. So, I think every scenario of human modifications to what nature has given needs to be examined on it's own merit, including GMO foods.

[Wheatwacked]

1 hour ago, Scott Adams said:

all commercial wheat is non-gmo

Yes. Modern wheat was created through mutagenesis, a type of hybridization pre-GMO technology and is exempt from GMO oversight. Norman Borlaug received a Nobel Prize for it in 1970.

I do believe in better living through chemistry, but sometimes profit trumps safety.

[Jill Robinson]

On 3/22/2022 at 12:28 PM, Squiishtopher said:

  This is my first post here. I’ve looked at the website on and off for years, but could never get myself to join. I was diagnosed with Celiac disease when I was 6 years old. They noticed I was extremely malnourished and super thin, so they did some tests. Following that, they did a biopsy which confirmed what they suspected. My mother took to it right away. She was very strict about it. Same with my maternal grandparents, as they had my Grandmama (great grandma), who was diagnosed with celiac later on in her life. My paternal side, not so much. From my diagnosis to around 11 years old, they didn’t believe my diagnosis and therefore, did not follow my diet. I was sick constantly as a kid.

  Going further, it was hard to maintain the diet and the urges. The longest I’ve ever made it with no gluten was just over a year. It’s hard not to notice the connection between my binges and my depressive episodes. I’m now 18 and still struggle immensely with my relationship with food. I feel the symptoms and they get worse with every binge but I can’t seem to stop myself.
 

I have been well aware of all the medical issues both life threatening and chronic, but it seemed to fuel my guilt and harmful thoughts. I am terrified now that all the issues I have currently were caused by my lack of self preservation. After years of balancing medications and going to therapy, I’m finally able to acknowledge the pain I’ve caused myself. I wish to speak to my family doctor about this but I’m also afraid of the judgement. Even worse than that, I am terrified she won’t believe me.

So, how do I strictly follow my diet when the urge is stronger than protecting myself? How do I bring this up to my doctor?
   
 

Christopher

I get it! I’m 68 years old! I have recently since getting on this forum decided to embrace celiacs! To be excited about a better way to eat and live! The gluten free products are growing in the grocery store! I’m not old enough to feel the way I have, you sure aren’t!! The past happened for many of us some wasn’t great but we look forward to what can be and move. On! Stay on this web sight learn and look at the recipes they look pretty easy! We are blessed in having the ability to embrace this, it’s easier now then it was when you was a child! Embrace embrace celiacs love it! If you have a craving find a recipe for it! My son and husband are very good cooks! You can be too! My best wishes for you! Prayers and love so boy! You got this! Heck I found they have gluten free beer now! I’m excited 

[Jill Robinson]

1 minute ago, Jill Robinson said:

I get it! I’m 68 years old! I have recently since getting on this forum decided to embrace celiacs! To be excited about a better way to eat and live! The gluten free products are growing in the grocery store! I’m not old enough to feel the way I have, you sure aren’t!! The past happened for many of us some wasn’t great but we look forward to what can be and move. On! Stay on this web sight learn and look at the recipes they look pretty easy! We are blessed in having the ability to embrace this, it’s easier now then it was when you was a child! Embrace embrace celiacs love it! If you have a craving find a recipe for it! My son and husband are very good cooks! You can be too! My best wishes for you! Prayers and love so boy! You got this! Heck I found they have gluten free beer now! I’m excited 

I meant sweet boy! Sorry for the typo! Lots of love sent your way from Texas! 

[knitty kitty]

@Squiishtopher, @heidirae, and @Starrmomma,

Supplementing with the eight essential B vitamins can help stop gluten cravings.

Wheat products are required by law to be enriched with vitamins and minerals lost in processing.  In other words, wheat products have vitamins added to them. 

Celiac Disease damages the small intestine where the B vitamins are normally absorbed.  We often do not get enough B Complex vitamins while we are healing because of the damage done by Celiac and because the gluten free diet can be deficient in these vitamins.

By supplementing with B Complex vitamins, the body will be ensured of getting all the B vitamins it needs to recover and function properly.

I became very ill with vitamin and mineral deficiencies.  The doctors I saw did not recognise vitamin deficiency symptoms.  I'm a microbiologist, so I had studied this stuff at university.  I knew the pharmaceuticals the doctors threw at me were not helping, the pharmaceuticals only covered up the symptoms, but the real problem remained.  

And I craved gluten, not for the gluten, but because they were a source of the vitamins my body was craving.  

I started supplementing with all eight essential B vitamins.  Our bodies can't make them so they must be consumed every day, hence they are called "essential".

Deficiency in many of the B vitamins will cause altered mentality.

It's rare to have just a single vitamin deficiency.  

I've had Thiamine (Vitamin B1) deficiency that resulted in Wernicke's- Korsakoff syndrome and was written off as crazy by doctors and psychiatric "experts".  High dose (more than 500 mg/day) thiamine therapy was the only thing that corrected that.  Thiamine deficiency is associated with Anorexia, Bulimia, and Binge and Purge disorders, and Obsessive Compulsive Disorder.  

I've had Niacin deficiency that resulted in Pellagra and had mental changes with that.

I've had Cobalamine deficiency (Vitamin B12) and experienced B12 deficiency dementia.  

Vitamin D deficiency caused severe depression.  Magnesium deficiency caused horrible nightmares.  Vitamin C deficiency caused skin problems and delirium.  

If we give our bodies the building blocks of essential nutrients, our bodies can heal themselves.  

I was ill because I was deficient in vitamins and minerals, not because I was deficient in pharmaceuticals.  Doctors don't recognize vitamin deficiency symptoms.  Doctors are trained in medical training institutions funded by big pharmaceutical companies to prescribe pharmaceuticals.  

I've posted previously in this thread studies done on mental health and vitamin deficiencies.  Please read them.  Vitamin and mineral deficiencies will affect your mental health.  Correcting vitamin and mineral deficiencies will help more than putting a bandaid antidepressant on the problems.  

Correcting deficiencies promptly is important. Deficiencies left untreated can cause permanent brain damage which can be seen on MRIs.  

 

On 3/25/2022 at 4:27 PM, knitty kitty said:

Here's some helpful reading...

Nutritional therapies for mental disorders

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248201/

And...

Bread and Other Edible Agents of Mental Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809873/#!po=18.0556

And...

The Role of Vitamins and Minerals in Psychiatry

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/#!po=10.0000